Nathaniel Centre Submission to the Justice Select Committee

Bioethics, Politics and Slovenly Language: Lessons from History

John Kleinsman reflects on the use of language and terminology, noting that the words we choose not only reveal but also shape our thinking. The history of the Nazi genocide offers insights that are relevant for our time, insights that highlight the links between language and action.

Single Mothers are Saints

These days any single mother who decides to keep her baby is a heroine … even a saint. Ironically, for those who identify as Catholic, greater courage may be required …” writes John Kleinsman, director of The Nathaniel Centre

Submission to the National Ethics Committee on Assisted Human Reproduction (NECAHR) on Embryo Donation for Reproductive Purposes (2004)

Submission on Human Tissue (Organ Donation) Amendment Bill (2006)

A Submission from The Nathaniel Centre – The New Zealand Catholic Bioethics CentreIssue 19, August 2006

General Comments

We are called to show the utmost respect to a person's body at all times, including after death. This respect is an ongoing expression of the dignity owed to each person on the basis of our shared humanity. To desecrate or in some way to violate someone's body is simultaneously to desecrate and violate the person. A person's body is integral to, rather than incidental to, their personal identity. In New Zealand this responsibility is reflected in the longstanding current law which holds that no one can ever "own" the body of another.

In the Catholic tradition we believe that all human beings are created in the image of God. We speak of human nature as being corporeal and spiritual. Yet, while accepting such a distinction (sometimes expressed in terms of "body" and "soul") we reject any dualistic understanding of the human person. The body is not merely a vehicle or container for the person. Spirit and matter are not two natures united, but rather their union forms a single nature. We understand all life to be a gift that is entrusted to us from the Creator. The dignity accorded to human life can be understood as a direct response to the belief that life is a gift to be held in trust.

The donation of one's organs and tissue after death is a response that is consistent with the respect we are called to show towards our own life. Catholic statements and teaching on organ and tissue transplantation speak of it as a form of "self-giving", a selfless act of love modelled on, and motivated by, Jesus Christ's unselfish offering of his own life. For this reason, the donation of human tissue and organs is often referred to as an "enduring gift". No one should ever presume such a gift. Provoked by love, and freely offered, an act of tissue or organ donation can be seen as an expression of human solidarity that serves the common good.

Organ Donation and Consent

1. Nobody should be able to lay a claim to the body of another except on the basis that it has been "gifted". The gifting of human tissues or organs, either before or after death, is not something that anyone should feel obliged to do, or be pressured into in any way.

2. For this reason, the use of all or parts of a person's body should only ever be done with their explicit consent, or, where such consent has not been recorded, with the consent of next of kin or close family recognised as knowing the mind and intent of the person. We recognise and uphold the intent of the proposed Human Tissue (Organ Donation) Amendment Bill legislation to ensure that all consent is informed and free of duress.

3. From a moral standpoint we regard the donation of one's body as a "heroic action" and a rich gesture of generosity to fellow humans. The Catholic theological analysis of organ donation as an "enduring gift" highlights the respect given to informed individual choice. Those who are ultimately responsible for shaping legislation around tissue and organ donation must seek to preserve and promote such actions for what they truly are - rich gestures of generosity. For this reason we would be opposed to an "opt out" register based on "presumed consent". The onus is on our society to properly educate and inform persons and obtain their informed consent. We support the proposed Amendment Bill which emphasises the need for persons to "opt in".

Consent – Binding or Non-Binding:

4. In New Zealand, respect for the autonomy of the patient is a fundamental principle that informs the provision of healthcare in New Zealand. This principle is upheld in "The Code of Health and Disability Services Consumers' Rights". Right 7 spells out the "Right to Make an Informed Choice and Give Informed Consent". Right 2 upholds the "Right to Dignity and Independence". While recognising that the principle of autonomy exists alongside - and may at times be in tension with - other key ethical principles, we hold the view that proper respect for the dignity of a person normally implies that their expressed wishes as to what happens with their body after death would be upheld.

5. In reshaping the legislation relating to organ donation after death, we wish to highlight the importance of giving proper consideration to the cultural and religious diversity of New Zealanders. The dominant model of informed consent upon which health-care decisions in New Zealand are made is largely premised upon particular cultural assumptions about personal identity and well being in which the person is defined first and foremost as an 'individual'. These assumptions are somewhat inconsistent with other cultural understandings in which an individual's personal identity is more strongly tied to the family or whanau group to which they belong. The differences in assumptions provide for different approaches to personal decision making, which at times can set up a tension. While the strong presumption should always be to act in favour of an individual's expressed wishes, we would be uncomfortable with a legal framework that ruled out absolutely a family's rights to veto their loved one's wishes. A system that seeks to resolve this tension by creating an automatic legislative preference for one set of cultural or religious assumptions over another is arguably unfair. We see that the application of the principle of informed consent within different cultural and religious frameworks provides one of the greatest challenges in shaping the new legislation.

6. The existence of an individual's clearly stated wish to be an organ donor creates a strong moral claim in favour of carrying out those wishes. At the same time, the medical process of obtaining the organs necessarily changes the natural dynamics that surround the death of a loved one. As a result, the actualising of a person's decision to be a donor makes significant additional demands on a person's family / next of kin, especially when it is filtered through the lens of anticipatory grief. The needs of family and loved ones also matter. The benefit of not departing from current best practices around organ donation (whereby health professionals will only proceed if there is family or next-of-kin approval) is that there is a guaranteed incentive to work closely with, and be sensitive to the multiple needs of the family of the deceased person.

7. One of our concerns is that there may not be the same incentive for health professionals to work alongside the grieving family if future legislation was to insist on an absolute presumption in favour of acting on the dead person's wishes regardless of her/his family's approval.

8. We wish to see the appointment of independent personnel, specially trained in grief and trauma and with specialised knowledge about the process of organ donation, to manage the process around organ donation. Such people are already working successfully in many hospital environments world-wide. The advantage of such personnel, apart from being specially trained, is that they are not involved in decisions around care and treatment options, and nor are they involved in the actual transplantation process. Thus there exists a clear separation between those assessing the likelihood of death and those involved in any subsequent harvesting of organs. They can address the particular grief needs of the deceased person's family/next-of-kin without having any perceived agenda. This system would also assuage the identified – and understandable - hesitation of some ICU doctors to approach families for consent.

9. The wishes of the deceased are paramount, and an individual's wishes should be upheld in all but exceptional circumstances. In cases where the family of a would-be donor object on cultural or religious grounds, it would be part of the role of the trained and independent personnel to work with the family. It should be their starting presumption that the issue would be resolved in favour of the individual's wishes. We believe such a process would in most cases resolve family/next-of-kin concerns while upholding the express wishes of the deceased, bringing about a win-win situation.

10. Nevertheless, in the face of continued cultural and/or religious objections we believe that the legislation should provide a degree of ethical and legal space for the wishes of the family to prevail. Respect for cultural and spiritual values is a strong aspect of New Zealand culture and is enshrined in many important pieces of legislation relating to health and welfare. Furthermore, to insist otherwise, that is, to provide for absolutely no circumstances in which the family could over-ride the deceased wishes, could, in the long-term, have a negative effect on the overall willingness of some individuals belonging to certain groups to become donors.

11. While much has been made of the fact that the current legislation allows family members to over-ride the expressed wishes of family members, it is our understanding that it has not been established that this is necessarily a significant factor in New Zealand's low rate of organ donation. In our opinion, making all New Zealander's more aware of, and educating and informing them about, the issues surrounding organ donation are the key factors in positively influencing the rate of donation in New Zealand.

12. The importance of keeping family closely involved in the decision making at all points becomes all the more evident when one considers that a sustained campaign to increase donor rates has the potential – even if unwittingly – to change the dynamic around end of life decision making. With a more focused drive to source organs comes an increased risk of abuse; that is, decisions being made that may not, in the first instance, be in the best interests of the critically ill/dying person. It is never permissible to bring about or hasten the death of a person for the purposes of retrieving organs, even when this is done to prevent the death of other persons. The input of the family remains an integral part of the care of the person and a key to ensuring that good decisions are made, and the risks of abuse minimised.

13. Furthermore, the necessary participation of family and loved ones in the decision whether or not to withhold or withdraw treatment or life-sustaining equipment is part of the process of organ donation. This means that the family are already intimately involved in the process of organ donation. Good legislation will take this reality into account as opposed to presenting the decision about organ donation as a 'stand alone situation' that should be managed quite apart from what precedes and follows it.

Systemic Issues:

14. Mindful of the relatively low rates of organ donation in New Zealand, we recognise the need for individual New Zealander's to be encouraged to think more seriously about their own willingness to act as donors. Education programmes integrated into the health curriculum could provide an important means for achieving this. Effective marketing strategies such as have already been undertaken by the Ministry of Health on various issues may also be an effective strategy. The proper resourcing of these campaigns requires a certain amount of political will. A higher level of awareness among New Zealander's will hopefully mean that more and more people will have discussed their decision to be a donor with family and next-of-kin at the time when they make their informed choice and well before the actual circumstances in which their decision needs to be effected.

15. We agree strongly that the current process, whereby individuals record their consent to be an organ donor at the time they renew their driving certificate, is inadequate and ineffective. This is the case not least because the option of becoming a donor is presented in a way, at a time, and in a place where there is insufficient time and information for people to make a properly considered choice. The setting up of the Organ Donation Register as specified in section 4B seems a suitable and robust means for people to have their wishes recorded.

16. We also believe that the relatively low rates of organ donation in New Zealand may reflect inadequacies within the current health system such as a shortage of available ICU beds. Issues such as these are of a more systemic nature. Once identified, they are also best dealt with through political means.

Conclusion

A comparison of New Zealand organ and tissue donation rates with other countries shows that we have one of the lowest donation rates in the world. We support efforts to increase the rates of organ donation in New Zealand. The nature of organ and tissue donation is that it is a "gift" and the processes around organ and tissue donation must respect this absolutely. Respect for a person's autonomy suggests a strong presumption to act in accordance with an individual's expressed wishes. The dynamics around end of life decisions, not to mention the needs and grief of family and next-of-kin, require that they remain closely involved in the process and that all attempts be made to ensure their support for a person's wishes to be a donor.